Colin's Story

Colin's StoryOn June 7th, 2014 at the age of 9, Colin was diagnosed with a brain tumor located in the 4th ventricle of the fluid filled area of the cerebellum. This is the lower back center of the head above the spine. Colin had surgery on June 11th, 2014 at St. Louis Children's Hospital to have the tumor resection in which 100% of the tumor was removed. 24 hours later in ICU Colin was then diagnosed with a stage IV aggressive malignant brain tumor called medulloblastoma.

Even though the entire tumor was removed, Colin needed radiation and chemotherapy in order to avoid reoccurrence and kill any remaining cancer cells that may remain in the cerebellum or CSF (Cerebrospinal Fluid). After two lumbar punctures the results did come back negative not showing any atypical cells in the CSF then leading to a standard treatment plan. This was amazing news!

Colin started Radiation through Proton Therapy on July 10th, 2014 for 6 weeks/5 days a week with 13 treatments to his head and spine, plus 17 treatments focused on the tumor location. He also began to receive once a week Chemotherapy during that time. Radiation ended August 22nd, 2014 in which Colin was able to ring the bell of a successful completion of treatment. After a short break Colin began 9 rounds of Chemotherapy in September of 2014. Each round started with a 2-3 day hospital stay at St Louis Children's Hospital with 2-3 different chemotherapy treatments via IV that where administered during hospital admission. Additional each round lasted 2-3 weeks which once a week chemo was administered via IV. Colin then was able to recover between each round with a 4 week break but during this time his neutrophils would severely decrease in which many times Colin was considered neutropenic which is basically no immune system. He had to receive numerous times IV fluids and blood transfusions in order to help his body recover from therapy. Colin’s “numbers” were watched closely throughout his entire treatment in which he received a blood draw at least twice a week. Colin was able to withstand the full chemotherapy plan with little reductions, he did have a small reduction towards the end due to one chemo causing a small hearing loss in the high frequency levels. Colin completed all rounds of chemo on August 20th, 2015 and is now monitored every 3 months with a MRI and doctor follow ups to monitor his day to day health and stay on top of any reassurance. At this time Colin is considered NED, No Evidence of Disease. It will not be for 5 years post the end of treatment with no reoccurrence that Colin would be considered cured.

Additionally, Colin is receiving physical and occupational therapy to get him back to his pre-surgery and treatment abilities. Physically he has suffered muscle tightness and neuropathy pain (foot/hand drop) from chemotherapy side effects. He has attended school as often as he can and his teacher is able to tutor him for any days missed then not having to fall back in his schoolwork. Colin also has many side effects from receiving radiation to the brain and is working with a private tutor to work on “retraining” processing in his brain. Overall, the treatment plan will be very long and hard on him, but Colin is a strong boy with amazing support. With that Colin was selected by St Louis Children’s Hospital to be their Team Captain of their team for Pedal the Cause, a bike event that raises 100% funds for cancer research for Siteman Cancer Center and St Louis Children’s Hospital. Colin was also selected as a featured fighter for the Pedal campaign in which through most of 2015 Colin’s story was shared online on onsite for the Pedal fundraising efforts and on KMOV in their Road to Pedal campaign. Colin’s spunky attitude, wittiness and sweetness won over hearts in which he did an amazing job raising awareness for the need of pediatric cancer research and fundraising for Pedal the Cause. We are very proud of all his work and links below are videos from the campaign.

KMOV Great Day St Louis – Pedal the Cause – Colin’s story 9/2015http://www.kmov.com/Clip/11761712/pedal-the-cause-colins-storyKMOV Harris’ Heroes – Pedal the Cause – 9/2015http://www.kmov.com/story/30115818/10-year-old-forced-to-relearn-skills-following-cancer-diagnosisPrior to diagnosis Colin began playing hockey at 3 years old with the Meramec Sharks Hockey Club and also played soccer and golf. Colin loves hockey and has earned a nice reputation within his own hockey club as an aggressive player and strong athlete. His favorite sports team is the St Louis Blues in which in September 2014 before chemotherapy he was able to attend a game and meet several players after the game. Here is when Colin meet his favorite player Ryan Reaves. From there Colin connected with many at the Blues just like Pedal in which his spunky attitude and sarcastic humor won over hearts. Colin was invited to a pre-season practice in September 2015 in which he meet many players and Blues staff members and toured their locker room. He then was invited to speak at the 14 Fund Charity Golf event later that month about the importance of the 14 fund helping kids like Colin. In October 2015 Colin then was honored at the Hockey Fights Cancer hockey game in which he was able to walk the “blue carpet” with Ryan Reaves and interviewed on Fox Sports Midwest. The Blues have been there for Colin throughout his battle and even sent a special message to cheer him on when he returned to playing hockey himself. Colin has slowly been getting back on the ice and on January 27th, 2015 was back in the game and played his first hockey game since diagnosis!